Ten things


An updated version about my girl.

Inspired by a piece written by Ellen Notbohm, Ten Things Every Child With Autism Wishes You Knew,  I have decided to also share the Ten things that this Mom wants you to know about our very own autism journey:

1)  She is perfect and whole just the way she is.  My hope is that she not only believes this for herself, but that the world will be a better place for knowing her.  It is my hope that she can feel that she isn’t needing to fit into our world, but the world is fitting into each others.  She inspires me to live with patience and acceptance.

2.)  When people say, “she is fine” they need to know how hard she is working to be “fine”.  She is holding it together as best she can.  In reality, she is likely worrying  about lunch and if someone will eat lunch with her. She is wondering what is next, when will she be done, and if she will have to talk to someone.  She tries really hard to be “fine”.

3.) She doesn’t care about fashion or trends.  She prefers to carry several heavy bags and wear soft comfortable clothes. She prefers to wear the same clothes over and over.  She hates change and this includes new clothes.  She never wears a coat-she does not have a sense of hot or cold, therefore she does not feel the frigid temperatures and sees no reason to wear a coat.  Her fashion is to carry the coat, load up with stacks and stack of books, wordsearches and tote bags.

4.) Identifying when she needs help and then asking for help is very difficult.   Texting has helped her tremendously to advocate more with her family, but its hard to text the waiter what you want to eat, so we keep working on it.

5.) She wants friends.  As the years have gone on and the complexities of friendships increase in the teen years, she has had more difficulty with this.   She no longer asks to have people over and I think she has become accustomed to a life without friends outside of classmates.  I might not say she prefers to be alone, it is just what has become over the years.

6.) She often tries to say cliche things or jokes but the timing is usually off.  She is oblivious to the nonverbal cues her conversation partners demonstrate.  She is usually able to converse if the topics are her preferred topics–food, movies, animals, and her family.  She is social, but mostly on her terms. She needs adults to continue to encourage her and she needs peers willing to be patient.

7.) She learns best with specific language and expectations.  When you____, then you _____.  Once she experiences something new, and has success, she will be more likely to attempt it again.  Success– that means just because she has been there, seen it, or tried it does not count as she knows it.  She has to feel success and accomplishment. And she may have to feel success on the task more than once.

8.) Although she doesn’t show affection in the way this world has decided is appropriate, she does care about people.  She is interested in people.  She is compassionate.  When she is around animals you can see the potential in her to share emotion and affection.  Texting has given her an other way to share feelings–she told me she loved me for the first time in a text.

9.)  It is my hope that she can be an independent as possible, however I am also realistic.  Being realistic doesn’t mean that I have given up, it means that I am content with who she is.  I am content knowing that concepts like time, money, identifying a problem or a need, and independent living skills are always going to things I work to help her understand.  Being content means letting go of the unrealistic expectations and embracing what is.

10.) I never hope to change my girl, she is exactly who she is meant to be.  There are absolutely things that I wish were easier for her, but that does not mean that I wish she were ‘typical’.   Her presence will forever change the lives of everyone in our family; my boys will be better men for knowing her and I will continue to learn and grow by being her Mom.  I wouldn’t trade that for anything.

17 thoughts on “Ten things

  1. This list is absolutely wonderful. I have the Ten Things Every Child With Autism Wishes You Knew as well. Your idea of personalizing it is wonderful. I would LOVE to do something similar to my blog. With your permission, I would credit you for the inspiration. Would you mind if I did this?

    Mandi

    • Hi Mandi…I am glad you like the list..I have handed it out to staff and teachers as well! I think it would be AWESOME for you to personalize it…I actually saw it on another blog a few years ago….I look forward to reading yours! Stacie

  2. hi there, i didn’t like this post. I ADORED it. :) I know you were writing from the bottom of your heart. I saw how much you love your kid just the way she is. Coz you see her bad habits (if those are the right words, I’m not sure) but you see more of what she can do and how she can make other people become better persons. And from your words I know how hard it must be to always try and fit your feet on your daughter’s shoes just so you can enter her world making it easier for her to cope up with unfriendly kids. I can feel that you feel how she feels that’s why you wish some things were easier for her. You’re exactly my ideal mom since mine is really so busy with her work she hardly have time to ask me how am i doing. Wishing you and your family all the best. :D

  3. This is beautiful. I know an adult woman in her 50s now who has led a ‘successful’ life as an autistic, with jobs, friends, husbands and children.

    I wish that for your daughter too.

    Jonathan :)

  4. love this. My son’s best friend has severe OCD which has turned into tourettes (spell?) and while it isn’t autism, its a serious challenge and heartbreaking. He is like my other child.

  5. Stacie:

    You have grown with such love as a mother. It has been a joy to watch you, and come to an understanding of ‘the coat’. I am always proud of the beautiful woman you have become.

    With love,

    Jan

  6. I am a special education teacher who only recently began to work with students with autism ( most of my experience is with emotional and behavioral disabilities) and your beautifully written words are such a help in my quest to really serve these young people. Thank you for sharing your lovely daughter with me, and with others. She sounds wonderful.

    Karen

  7. I work with many children with disabilities at a small pediatric hospital. I learn so much from the families and I’m so glad that I found your blog! Thanks so much for sharing your journey.

  8. Very moving…”I never hope to change my girl, she is exactly who she is meant to be. There are absolutely things that I wish were easier for her, but that does not mean that I wish she were ‘typical’. Her presence will forever change the lives of everyone in our family; my boys will be better men for knowing her and I will continue to learn and grow by being her Mom. I wouldn’t trade that for anything.”

    Too many wish for something different rather than simply being who they are….

  9. with everything in me I am so happy to read this. I am so happy you wrote this. I had a daughter with special needs she has been gone a long time..and I don’t know if I can write much more..I love her and miss her everyday. She taught me so many wonderful things…how to live in the moment for 1..things most us of will never be able to do..she…oh my…not yet…you were blessed when she came into your life and so was she…and so was I…thank you again

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